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FASD: A Lifelong Disability. Kathleen Tavenner Mitchell, MHS, LCADC Vice President and Spokesperson National Organization on Fetal Alcohol Syndrome. FAS described in U.S. Literature 36 Years Ago. Why are we still allowing women to receive mixed messages?
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FASD: A Lifelong Disability Kathleen Tavenner Mitchell, MHS, LCADC Vice President and Spokesperson National Organization on Fetal Alcohol Syndrome
FAS described in U.S. Literature 36 Years Ago • Why are we still allowing women to receive mixed messages? • Why aren’t medical and allied health professionals being taught about addictions and FASD? • Why does NOFAS have to hear the cry’s of young parents, who just did not know?
One Families Journey Living with FASD Karli’s First Birthday Party
14 years old • Special schools • Karli prefers to be with friends with disabilities • Great reading skills-poor math skills • Still sweet-still pretty!
Karli has FAS….Diagnosis helped us to understand Karli…we could now focus on what Karli COULD do!
Our Family Timeline • Years of addiction- exposed 3 more pregnancies to alcohol after Karli. • Buried 2 children. (more pain = more drink) • Involvement with health clinics: years of misdiagnosis of Karli • I am diagnosed with psychiatric disorders, no recognition of addiction; no screening, no intervention • 16 years of telling Karli that she was not trying her best • Believing that Karli would “grow out of it” • Received Diagnosis of FAS for Karli (16 year of age) • Acceptance: Advocacy
Karli at 16 Receives Diagnosis of FASNew house rules:No discussing what Karli cannot do!The focus changed to what Karli could do: • Great artist! • Friendly to everyone • Wants to be helpful • Everyone likes Karli • 100% pure of heart, Holy • Would not hurt another person-ever! • Really wants your approval • Great with the elderly and individuals with severe handicapping conditions
The Scarlet Letter Forever Marked as a Bad, Immoral, Unloving, Abusive MOTHER!!Stigma has lifetime affects on all family members
“We are not human beings having a spiritual experience, rather spiritual beings having a human experience.” Pierre Teihard de Chardin
Systems Impacted by FASD: • Healthcare, insurance, HMO, MCO • Education, (alternative/special ed) • Justice, Juvenile Justice (recidivism) • Shelters/Housing • Mental Health and Addiction (recidivism) • SSI and Disability • Public Assistance
COMPARISON OF CONGENTIAL EFFECTS FROM ALCOHOL AND DRUGS Adapted from Morris et al,
Autism/Aspergers’s Disorder Attention Deficit Hyperactivity Disorder (ADHD) Borderline Personality Disorder Attachment-Bonding Disorder Depression Learning disability Oppositional-Defiant Disorder Post Traumatic Stress Disorder (PTSD) Receptive-Expressive Language Disorder Conduct Disorder Common disorders identified with FASD
Alcohol and Sex Practices among 16-to-24-year-old American Women After drinking alcohol: • One in five have had sex that they regretted; • One in 10 have been unable to remember if they had sex the night before • One in seven women have had unprotected sex and engage in “risk drinking” • Birth defects associated with alcohol exposure can occur before a woman knows she is pregnant • Half of ALL pregnancies and 85% of teen pregnancies are unplanned National Clearinghouse for Alcohol and Drug Information
Prevention of FASDAssessment of mothers and their children • Screening • Intervention • Diagnosis • Appropriate Treatment
We all need to work together to reduce stigma…Alcoholism (and FAS) brain-based medical diagnosis • Family History: genetic susceptibility • Tolerance: The need to drink greater amounts of alcohol in order to “get high.” • Physical dependence: Withdrawal symptoms, such as nausea, sweating, shakiness, and anxiety, occur when alcohol use is stopped after a period of heavy drinking • Major Organ Damage: liver, heart, kidney, central nervous system, etc. • Secondary Symptoms: • Craving: A strong need, or compulsion, to drink • Loss of control: The inability to limit one’s drinking on any given occasion
Addiction Treatment Prevents FASD. Isn’t it time that the U.S. provide adequate treatment for all women ?